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Wednesday, August 08, 2007

In my last post I mentioned there is a laundry list of potential medical issues that goes along with a Down syndrome diagnosis. There are some preventative measures (some done annually, some done only once) to help identify any issues.

Kayla really, really, dislikes going to the doctor, or anything "medical." She doesn't even like to have her height measured. She'll stand against the wall, but as soon as they start sliding that bar down to rest on her head she bolts. I'm not sure where her fear (if it is fear) stems from, but it makes appointments hard. The last time she went to the ENT she did really well with sitting still and letting them look in her ears; I thought we were getting past the dislike of medical offices.

2 weeks ago Kayla had her blood drawn to check her thyroid (no symptoms - just a preventative measure). I haven't had a call back about her test results yet, but they've been fine in the past so I'm hoping that's still the case.

Last week she had 3 shots (was supposed to be 4, but they were out of 1 which means I have to bring her back in a month -won't that be fun?). The shots have nothing to do with Down syndrome, just the typical 4-year old vaccinations. This is just part of my story building up to yesterday.

So in the last 2 weeks she's had blood drawn and shots - both things that do hurt, albeit briefly.

She had an order put in for neck xrays to check for Atlantoaxial Instability (AAI). According to that article, approximately 15% of youth with Ds have AAI (not a very big percentage if you ask me), but it's recommended that kids with Ds have these xrays between 3-5 years old.

We tried doing this last year after Kayla turned 3. When she doesn't understand what's going on, or what is about to happen it unsettles her, to say the least. She was a little fidgety in the chair and holding out her arms calling "mommy" or "daddy" while they were trying to get the xray machine set up. When they were ready we were prepared to talk Kayla through and help her realize nothing was going to happen. Then one of the techs says, "We need to take around 15 xrays in about 10 minutes, and that's not going to happen." I asked what we were supposed to do now and he suggested she might need to have a cat scan instead. I was frustrated when we left the radiology department because he didn't even attempt to do the xrays.

So yesterday was the day to try again, I knew Kayla wouldn't be calm about this because of the last 2 weeks getting blood work and shots. Joe got off early to go with us. He would probably have done this anyway, but he actually had to be the one to take her for her xrays this time (no pregnant women allowed in the xray room you know!).

As soon as Joe started walking down the hallway holding Kayla she was trying to climb up his neck and saying no, then "mommy!" and then the tears...scared-sounding crying. It was hard not being able to go with her and comfort her, but I knew Joe was plenty capable. Joe told me later she was scared because he could feel her shaking, and later when she was standing he noticed her legs were still a little shaky.

I did worry about what would happen if she wouldn't sit still enough for these xrays; would we have to resort to a cat scan after all? Thankfully this time there was another tech who was patient and good with kids. They took their time (and no one else was in the waiting room anyway) which helped.

She eventually stopped crying and I just heard some sniffles. The tech came out to show someone the xrays and was told each time whether those were good or if they had to try again. One time she went back in to get some more I heard Kayla repeatedly yell out "NO! NO! NO!" Sounded like they were torturing her in there!

Joe told me she had to do more than just sit in the chair. She had to stand still and stare straight ahead, and then the fun part - lay on the table. He had to hold her arms and hips down and the lady tech held Kayla's head; thankfully she didn't move too much though.

They did finally get all the xrays they needed (hopefully they will be good enough to evaluate). Whew, I'm glad that's over! Now I just pray she gets the all clear and doesn't have AAI.

And to make an already long post even longer...I just wanted to thank everyone for their comments on my last post. I wish I had the time to respond to each of you who left a comment, but there just aren't enough hours in the day! I appreciate every kind thought, sentiment, and story that was shared with me. I appreciate the support and understanding. Thank you.

42 comments:

Poor Kayla (and poor mommy because it makes me cry to hear my kids cry in pain or fear) Although Amelia is only 16 months, I think she will be like Kayla -- hates the doctor -- he comes in the room and she starts crying, never mind the shots, she just cries when he uses the stethoscope. Isabella on the other hand loves him and has since a baby never cried and only barely cried with the shots (she's too tough.) I'll pray that the tests all come back good. I've been a little absent in the blogging world, so I had some catching up to do and I really appreciated your last post. Won't say anything else because you really said everything just perfectly!!

I just love reading your blog. Kayla is such a beautiful, precious little girl... I remember once taking my little boy for xrays and I could have screamed at the xray tech... Daddy's have the ability to remain calm in such situations.... Thank you for such wonderful and inspiring posts!

I don't blame her for being scared! It all seems so scary in that cold room with the big machine. When I was pregnant with Jason, Mark was 2 and they needed to do an xray on him. Since I couldn't go in, he throw a total fit and they had to tape him to a back board to hold him down and get the xray. I cried as hard as he did! It's hard to see our little ones so afraid.I hope that all Kaylas tests come back good and I'll keep her in my prayers.

Hang in there. Our little people may appear to be fragile on the outside, or to 'normal' people; however, they have more strength and stamina than most of us. There are somethings that are recommended that I have dedided against. Other things I have to subject Ivey to that I have no choice about. Either way, she shows me just how weak that I am AND...just how strong I am. You are doing a great job.

Wishing and praying for normalcy is part of my life. Fortunately, I pray for it less and less as time goes by. I have found that where I am, with my daughter, is the 'new normal'. But sometimes, I just want to be...without all of the other stuff.

I read your posts often, but never comment. Today I can honestly say that I understand-truly do-how draining doctors and hospitals can be. And, I understand that the possibilities of unknowns are gut-wrenching. She is a beautiful little girl touching many many people and hearts.gwen

Poor Kayla it has to be scary. I hated it when Nathan was little and we had to sit and listen to him cry, scream, kick and sometimes all of them at the same time while he had numerous tests done. I always felt so helpless. I can't imagine doing that and being pregnant.

Michelle...I am just getting caught up and scrolled down to read your special post below. What you wrote was so heartfelt and eloquent....and I couldn't have agreed more with everything!!!I realize I didn't have to live with the same outcome as you did, but with my first pregnancy, we were told it was likely she would be born with DS. We chose to keep coming back for ultrasounds, rather than have the amnio. The risk of the anmio scared me, and since there was nothing we could do to prevent DS anyway, I chose not to have it done. Each succeeding ultrasound looked "better" so that by the last one, the experts didn't think it was as likely. And for us, it turned out that, indeed, she did not have DS afterall. But I remember my husband and I talking beforehand, and as much as we didn't want our baby to be born with DS, we knew we would love her or him anyway...they would be person, a part of us, and still a gift from God.

You wrote so honestly and so beautifully, Michelle.

As for going to the doctor, my youngest has never liked the doctor of dentist at all...and when she was three and four, it was even harder. She is just now getting a little better at five...just a little! ;) My oldest is just quirky because she actually likes going! LOL

Poor baby! I totally understand how frustrating it is to not be able to explain that the scary machine won't hurt and it's really easy... They just won't hear it. Hope the results are what you're looking for, and that you're feeling well!

We had that done as well,she didnt have it...Kendall does have thyroid problems but is lucky in the fact that, that is all she has.You were bringing tears to my eyes describing Kayla.We also had to do xrays of hips and leg joints.

Awww poor little thing! It's so hard on children because they just don't understand what's going on. My oldest Shawn was SOOO hard to bring in to get his vaccination needles...he was terrified of them! Hopefully you will get good results from Kayla's xrays!! xox

Poor little thing. I don't think most little ones are crazy about doctor visits and having been what she's been through just compounds it. I'm relieved with you that it's over with for now. We'll just pray all is well.I think these things are as hard on mom and dad as they are on the little ones. Perhaps an ice cream celebration is in order :)

I've always wondered why they can't make medical equipment look "fun," like playground equipment or something. I'm sure to a three footer, all that silver steel and glass plates does look a little bit like a giant robot on the attack! Glad the technician wasn't patient and willing and hoping for great results!

I hope she gets the all clear too! Jack will have to be checked before he starts gymnastics and I dread it. He is so.so.bad at the doctor's office! But to be fair, they are usually drawing blood when he goes...so he is bad for good reason! ;)

Poor sweet Kayla. It's so hard to see them scared and even worse when you can't be there. Even with Daddy being just as capable, as Mommy, we want to be there to comfort them too. I'm glad she got a good tech who was good with her. Crossing my fingers for good results.

My Kayla had blood drawn yesterday for her allergy test. She was the same way. As soon as she figured out where she was she was like, "Daddy, I want to go home now."

Oh my goodness...my heart just breaks reading your story. It's so hard when our kids have to do things they don't want to do, but it sounds like she was very brave!!! Good for her!!Praying that everything comes back fine!

Poor Kayla :( I personally hate the doctor so I can only imagine what she is going through being so young and not really understanding that she has to go to be healthy. She is in my prayers, both for a healthy set of tests but also for a good visit so that perhaps she will grow to love her doctor and not fear it so much.

Thank you for the response on my blog. I actually havent been able to find many good thrift stores around here. We have a few child clothing re-salers but they are kind of exspensive. I'll keep an eye out and make a few calls. Thanks for the good advice!

I can sympathise with poor Kayla. That must have been hard for her. I've had doctor visit after doctor visit this year and I even get upset when it's time for the next one. In fact I go as far as chucking a tantrum. Hehe :)

aww poor Kayla. I know it must of been so hard for you to hear her cry. I know it helped a little knowing Joe was there but still it is hard. Your godchild would see a white jacket and just start crying.Even if we were at the mall and someone was wearing a long white coat. My husband could never stand to see the kids get their shots so i had to go through it myself. I hated it also. but once i held them my kids always calm down. I hope everything with the x-ray turns out okay.love ya,mimi

What a hassle. Sheena loves having her hair washed and brushed, - doesn't even mind it getting trimmed but as soon as an EEG technition gets anywhere near her head she hates it and screams/cries through the entire thing. It is horrible.

Wow. I so wish there was a more fun alternative for medical visits for all babies and toddlers. Because W.W. was premie the hospital didn't circumcise him when he was born as asked by Dad. So we had to do it when he was about three months and that was such a nightmare. Both of us were there for it but the whole procedure of restraining him just made me feel awful.

I hope all the tests come back good for you all and you don't have to anymore anytime soon.

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